Should I have been informed : Hi all. I... - Endometriosis UK

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Should I have been informed

Lornalost89 profile image
2 Replies

Hi all.

I wrote a post recently about crippling pain and how I randomly get it (who doesn't eh) bla bla bla long story short I went to A&E just over 13 months ago with suspected gallstones. It wasn't. HOWEVER I was told it was muscular, recently I have downloaded myNHS app and have access to the details in there. I was being nosy and looking through everything to find " on going acute problems splenomegaly" listed.

This was news to me never heard of it and it was listed from around the time I attended hospital in pain. Turns out it means enlarged spleen. Now this has NEVER been discussed with me, its never been investigated or treated. I started thinking the pain is due to my bowel endo but now I'm confused.

Do I have an issue? Do I request information or is it like "having a high temperature " as I'm told when my infection markers are up?

I know its maybe not the best place to ask but just wondering if anyone else had ever had any issues like this and how they moved forward with it.

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Lornalost89 profile image
Lornalost89
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2 Replies
Avourneen profile image
Avourneen

I just googled this and it said it is common after or with different types of infection and it can be a sign of serious illness too..I would go to your GP and ask them to look into it , give you some blood tests and refer you to a Hematologist. Or go and see one privately.Good luck xx

Lindle profile image
Lindle

Yes this should have been shared with you. I assume this must have been seen on a scan and should have been reported to your GP for appropriate actions. The first thing I would do is go to your GP and ask them to look at your full GP record around the date this was recorded on what you have accessed to see if it is on your main record. If so ask why you have never been informed of this and what does it mean for you now going forward. I've included an extract from Good Medical Practice which all UK GPs must follow. The link to the full document is:

gmc-uk.org/-/media/document...

Don't lose track of your endo though as your pain can still be from that and assuming you are in an endo centre for bowel endo it would be worth contacting them about ongoing bowel issues.

Good Medical Practice 'Sharing information with patients'

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